Hello all, saw my rheumy yesterday. By some twist of fate I was having an awful day, aching, stiff, swollen, and exhausted. Rheumy finally got to see what I’d been talking about on previous appointments. I have also been having trouble with my shoulder, I can’t lift my arm past a certain point without pain. My rheumy put me on a 6 day course of prenisone, then I am to start taking Plaquenil along with my zorvolex. I’m a bit nervous about the prednisone but am feeling so crappy I’m willing to give it a try. In no way can I ever say I’m happy to be diagnosed but it sure feels good to be taken seriously. I’m also scheduled for an MRI in a few weeks of my pelvis due to my lower back pain. Thank you all for encouraging me not to give up
How good it is to be taken seriously and to be making progress. Of course you don’t want this disease! But having a working diagnosis means you can move forward.
A six day burst of prednisone is probably as much a diagnostic move as anything. If your symptoms improve with it, that gives the rheumatologist an indication of what’s causing your misery. Just go with it.
Btw, Yael, who arrived here at the same time you did has a diagnosis too. Her thread is interesting.
I’m so glad you hung in there and that you are moving forward. Enjoy the holidays.
S
Result! Very glad to hear that you and your rheumy are basically singing from the same hymn sheet now. It really is a relief isn’t it?
I think Prednisone has its uses and providing a bit of much-needed relief is chief amongst those uses. If it eases you up you’ll be able to move around more normally and that in turn helps with pain and morale too.
Will you see your rheumy when you have your MRI? Like Seenie I’m wondering whether they will be further influenced by how you respond to the steroids. But more importantly in the here and now, I hope you enjoy the holidays all the more for this good news.
Thank you! I started the prednesone burst yesterday and it seems like I’m already feeling better, is that possible? Kind of an awesome Christmas gift. I will have an MRI in about two weeks and then seevmy rheumy beginning of Feb to review and also see how plaquenil is helping. I have been doing a lot of reading on this site and am following a lot of posts. I’m not that informed about MRI s. If I am having a ‘good day’ and am not in that much back pain, will inflammation still show? I hope everyone here can enjoy their holiday.
Bravo! It is certainly possible to feel better that quickly: I can feel the steroids going to work (and swelling going down) in about two hours. If steroids do that for you, what you have is inflammation, which is a great piece of information for your rheumatologist. Aside from anything else, the short course of predni may just have been an act of kindness on the part of the rheumatologist, thinking that it would be nice to give you a few days of relief over the holidays. Whatever, I’m so glad for you that it seems to be working. Just curious: how big a dose are you taking?
I am not an mri specialist either, but I don’t think that having a good day will change the information that your MRI will provide. Tntlamb might know, but he’s playing Grandpa Claus at the moment. (shhhhh don’t tell him I said that.)
Warmest wishes, Vogele, for a comfortable holiday and a happy new year.
Thank you for those warm wishes, Seenie. I hope you have had a great holiday also. My prednisone burst is a 6 day one. 6 pills the first day, 4 mg each pill. The second day, 5 pills… And so on.
Thank you, we did have a nice (and quiet!) day.
That isn’t a huge dose, and it’s for less than a week, so if it’s giving you a few good days, enjoy them. It’s probably a good reminder for you that it’s not “in your head”. By the time I was diagnosed I was (with the help of my GP) questioning how much really was disease and how much was my imagination. In hindsight, the answer was that it was ALL real and it was my brain that was minimizing and ignoring the signals.
Enjoy the respite and look forward to better days ahead.
Vogele, like Seenie said, the prednisone works quickly and well if it’s inflammation you’re having…so that also affirms the diagnosis, which, yeah, not a happy diagnosis, but at least proves your symptoms weren’t imagined! I had two prednisone bursts and begged for more, they made me feel like I was walking on air! But, my doctor wouldn’t give me more and that was okay because it forced me towards going on the “scary” med–which in my case turned out to be Enbrel. I found out what prednisone can sneakily do to you is actually way “scarier” than Enbrel in the long run. But, isn’t it great to feel so good for once? I hope the Plaquenil and zorvelex work for you and you can continue to feel so good! (My husband is on plaquenil–his doctor doesn’t quite know what causes his inflammation, except he does have problems with gout. But, anyway, the plaquenil seems to be keeping his inflammation at bay.)
thank you Grandma_J! As my kids would say, “omg!” I feel so stinkn’ good! I still have some discomfort in my lower back but am feeling a bit like superwoman! I’ve gotten so much done around the house. I’m very hopeful the Plaquenil will work. We shall see.
You make me laugh! OMG I feel so stinkn’ good … but remember that feeling!
One of the problems with this disease (and there are so many diagnostic and treatment problems) is that it’s possible to feel like a bag of dirt for so long that you forget that you were ever any other way. Seriously … my first DMARD attempts were seen as being “good enough” because they gave me a tiny bit of relief (or it might have been placebo effect). It wasn’t until two years later (and, in retrospect, 15 years after symptom onset) when my first biologic “got traction” that I suddenly remembered what it felt like to have some energy and drive again. So remember what it feels like to have the brakes put on your disease process! And don’t give up the quest for disease control until you feel pretty much like you do now. This is your high water mark.
And, then, if you don’t get treatment soon enough (like Seenie, me, and so many of our LWPsA friends) you never, ever feel perfect again. I deal with my shiy a feet all day long, every day–when I sit for awhile and get up it’s almost impossible to walk, at the end of almost every day they hurt so bad I could cry. My lower back–actually the mild pain of a cattle prod is in my butt–I never know from day to day if that’s going to suddenly go terribly bad like it did two years ago. I have horrible anxiety about my back and feet because it’s scary thinking about being wheelchair bound or bedridden…hopefully that’ll never happen, but it is an almost constant worry of mine! And, I always think how it would be a thousand times worse if I still had all the PsA symptoms I had 2-1/2 years ago! I wouldn’t wish this damage on my worst enemy–and, on a positive note–I still cope pretty well with very few pain meds (I use ice packs a lot) and I do always keep in mind there are many, many people my age (63) who are dealing with a lot worse situations! Sorry for the whining–boohoo! 
I am on plaquenil too. They took a long while to start working, but then certainly relieved some of the symptoms and got the inflammation levels down from over a hundred to around fifty. I should be on something stronger, but other medical conditions got in the way, but I feel I am just about treading water for the most part - which is better than the speed with which I was getting worse beforehand. I now feel that my time with plaquenil is coming to an end, though, and things are getting worse again and so I’m going to fight for the biologics in April when I have my next appointment. But the good thing about the plaquenil is the lack of endless tests and being far less likely to get side effects than the stronger DMARDs!
Thank you for the info darinfan, very good to hear Plaquenil helped, at least for awhile. I am being very optimistic. Seenie, I absolutely agree that one forgets how it ‘used to feel’! These past days I’ve been calling out to my family various exciting news bites “look at Mom walking down the stairs like a normal person!”. " Look at me, I can raise my arm all the way up!" And so on. I’m fortunate my family shares in my enthusiasm. I will try to keep all this iin my mind as the old pains come back. Grandma_J, I am so sorry about your pain and destruction of body. If it is in anyway helpful to hear, it was because of all the stories i read on here that really encouraged me to keep looking for an answer. I truly would have just accepted a diagnosis of OA and carried on. But, I read your stories and knew something else was going on. I thank you all for that. 
It’s very strange how we adapt quite quickly to pain being the new normal!
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Kinda scary too. LOL
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It’s so easy to accept something like an OA diagnosis. I did: I questioned my doctor repeatedly about whether “something else could be going on” when my knees deteriorated quickly. She was always very dismissive. I quit asking. I even quit mentioning other symptoms because she blew me off every time. Did her approach make sense to me at the time? Not at all. But I gradually adjusted to a new normal and became convinced that I was just old and tired and worn out. It wasn’t until an x-ray revealed some distinctive joint damage that the “inflammatory arthritis” penny dropped. And that’s how I got my diagnosis.
I so regret my wasted years and damaged joints, and my personal mission here is to do what I can to help people avoid going where I have been. What needs to happen is that at the end of the appointment, you need to walk out thinking “Yes, that diagnosis and the treatment plan makes sense to me.” When that happens (whether the diagnosis is what you expected or not, and whether you like it or not) you’re in a really good place. And, Vogele, I think that’s where you are now. Well done.
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The big battle I had with my first long-term rheumy (as opposed to the one who diagnosed PsA or the very well-respected rheumy I saw privately) was about OA being caused by PsA. I still don’t know how to sum up his view as it was inconsistent verging on demented, but it seemed to be ‘OA is OA, no matter what the cause and we’ve all got it after the age of about 40 so tough!’ But to me it matters very much that I got OA in various places extremely quickly after PsA took hold.
My last rheumy was excellent but not big on imaging. Now I have another who seems great and did do baseline x-rays (baseline for her purposes) at my last appointment. If when I see her next there’s a lot of new OA damage to digest I am hoping that she will talk to me about whether my PsA happens to be a very OA-ifying version rather than causing typical PsA erosions. The OA in my knees is readily accepted as secondary to PsA by most non-insane rheumys as they have been so swollen, so long and so often (the knees, not the rheumys). But I’d like an opinion at least about what I assume is OA in my lower back and fingers. I think it’s primary but if it’s secondary and proceeding apace maybe my current bio isn’t working quite as well as I’d like … However if a doctor I trust and respect tell me there’s no way of knowing one way or t’other, I can accept that too. That’s one reason why having a good rheumy is so important, I don’t want the return of the nagging feeling that I could be just one skilful doctor away from better health.
Ick, Sybil, I don’t like to hear you questioning is that OA in your back? I know you’re on Humira, so hopefully, it IS OA (which, why would I say hopefully about that?)–oh, because if it’s PsA in your back, we would have to worry the Humira is fizzling out. But PsA or OA, yuck back problems can lead to some huge problems and the pain can get worse with more and more damage. Are you applying ice packs? Do any exercises help? Just be really careful–lifting, pushing, pulling, reaching–all these things can trigger a disc protrusion when your back muscles and ligaments are weak and sore.
Good reminder to keep an open mind Grandma_J, thanks. But my lower back hurts like it has done occasionally for years only more so, never in the morning, mainly as a result of standing around later in the day & also I think this is a ‘popular’ location for OA in older people. Doing a bit of Tai Chi or going for a walk sorts it super quick so far. But yep, your warning has been heeded, I’ll talk to my rheumy.